I first noticed a small lump in my left breast in 1993. I was 32 years old. It was so persistent that I gave the lump a name . . . "Irving." We were in the midst of relocating from Washington D.C. to Arizona at the time, and I put "Irving" on the back-burner; to be dealt with after we settled into our new environ.
Early in 1994 I scheduled an exam. I was told that it was most likely a benign cyst, or the result of fibrous breast tissue. No one was concerned as I had no history or lifestyle predilections toward cancer. I was concerned nonetheless and asked how we could ascertain that it was indeed benign. I needed to put any lingering concerns behind me so that I could re-shift my focus on preparing for the Arizona Bar and caring for my two young daughters. The physician said he would be happy to do a needle aspiration in office. It was awful, it was painful (the prep part numbing the area) and it was botched. He said that the lump disappeared when he inserted the needle, so it must have just been a cyst. He put a bandaid on the site and sent me on my way.
It took about 3 days before the site was not hyper-sensitive to touch. Five days later, I found that "Irving" was not MIA, but right at home where he had always been.
Starting at age 35 I started having mammograms -- about every other year. I had thought this was a good idea since "Irving" continued to keep house within me. Each time the mammogram showed what appears to be fibrous breast tissue. No one found this remarkable and I went on with my life.
Fast forward to age 47. January 2009, "Irving" starts to become painful. I am told that cancer tumors do not cause pain so that it is most likely just hormonal (spot on it was, as we later discover...certain breast cancers are hormonally driven). April, 2009, "Irving" is not only painful...all the time...but he is becoming physically noticeable in my breast. I call my GYN (not the same one as in 1994) to make an appointment. Dr. Alperin's first available is July.
I explain my concerns. The scheduling nurse pulls my file, reviews the past mammogram results: fibrous breast tissue, nothing remarkable. She notes that I am due for another mammogram. I ask if I can get that done first, so I can have the results when I see Alperin. No, the doctor or PA has to write those up. I ask if I can get into Alperin sooner than July, given my concerns. Since this is not an emergency, he is really booked up at this time for annual exams...I can have the date in early July and I can be put on a waiting list for cancellations.
July 6, 2009, five minutes in the exam room, after I explain my concern regarding the changing "Irving", Dr. Alperin is in warp-drive urgent mode. This mass has to be reviewed immediately, tomorrow...this week at the latest. There can be no delay. I am scheduling you for a diagnostic mammogram and ultrasound. He writes STAT on the orders.
Early detection? I was not one of the 1900 women that it purportedly benefited. Indeed, going through the processes of early detection appeared to lull everyone, myself included, into believing I had nothing to worry about. At least not until I presented with something that could not be ignored. BTW - I found out later, which has been confirmed times over, my form of breast cancer (invasive lobular) is not detectable through the conventional "early detection" methods. Why? Because it is usually misdiagnosed as fibrous breast tissue.
The Accidental Breast Cancer Patient
After a revolving door of mammograms, cancer medication and lumpectomies, one woman wonders if early screening is the best method of preventing breast cancer.
My 40s have been haunted by mammograms. This may sound ungrateful, considering I'm a breast cancer survivor whose cancer wouldn't have been discovered without them. But my breast history is as complicated and inconclusive as the debate over the new screening recommendations. So I'll just say it: I'm not sure if early screening was a good thing for me.
I entered my 40s an ox: strong, invincible. I practiced yoga, kayaked, rarely got sick. So when I went in for my annual mammogram, at 41, I was shocked to be told that my films looked "suspicious." I had no risk factors. No cancer of any type in my family. I had my first baby at 28. But none of that mattered.
Next thing I knew, I was strapped to a surgical bed for a biopsy. The verdict: benign. I had something called atypical hyperplasia, an accumulation of abnormal cells that could be precancerous-or not.
After two weeks on the couch, my chest wrapped in gauze, I was left with a small scar, a bruised psyche, and chronic fear. I was now on the close-watch plan, which required mammograms every six months, as well as callbacks for additional examinations. This increased scrutiny was considered a good thing, and I tried to see it that way, but honestly, I dreaded the appointments, those extra films, the anxious waiting.
At 43, that scrutiny found "suspicious" calcifications. Again, no lump-just a tiny cluster of white, seen only by mammogram. This time I had a core biopsy, which entailed being smashed facedown on a surgical bed, my right breast squished into a hole while a long needle went fishing for cells.
Again, benign.
But I continued on close watch. More paper gowns. More films. More fear.
At 45, the mammogram again showed tiny calcifications. And again, I found myself strapped to a surgical bed-this time for a lumpectomy.
The pathology came back: ductal carcinoma in situ (DCIS), cancerous cells in the milk duct. I was spared radiation and chemotherapy and was prescribed tamoxifen-an antiestrogen with a long list of side effects, including insomnia, hot flashes, and possible increased risk of uterine cancer and heart disease. A recent study also suggested that it may increase risks for hormone-negative cancers, a more aggressive form compared to the hormone-positive cancer that I was thought to have. To complicate matters, a Mayo Clinic pathologist I later consulted believed that my DCIS was actually another case of atypical hyperplasia.
Benign.
So did I need all those tests? All that treatment?
I wish I had a definitive answer. The confusion brings up an uncomfortable truth about medicine: Recommendations are based on population studies, not individual cases. My heart goes out to every woman saved by early diagnosis, but, as breast expert Dr. Susan Love has said, screening before 50 is tricky: Younger women have dense breast tissue; it looks white on a mammogram, and so does cancer-it's like "looking for a polar bear in the snow." Tumors are missed, and non-tumors are biopsied. Worse, Love says, "The risk of radiation is higher in younger women and cumulative. Additional cancers caused by the radiation have to be weighed against the ones found."
For every one in 1,900 women who is saved by early detection, how many women are harmed? Will I be harmed? This we do not know.
What showed up in my mammograms may have been an overreaction to my body's changing hormone levels. It's possible that if I had waited for my first mammogram at 50, they would have resolved on their own. Autopsies on women in their 80s and 90s have found DCIS that likely existed for decades and never spread.
Did the cells excavated from my core biopsy at 43-and all those mammograms-actually cause the DCIS? Or would those "suspicious" white spots, left undetected and untreated, have eventually grown into an invasive cancer-and killed me? I don't know. Doctors don't know.
What I do know is that it's up to me to treat my body with the utmost love and respect. So I feed it organic foods and sweat every day-do hot yoga, have sex, run marathons. Anything to make my heart race and skin flush. Anything to make me forget the breast cancer diagnosis and all those mammograms.
Gail Konop Baker is the author of Cancer Is a B****.
Originally published on February 19, 2010
Wow - I can't believe what I just read.
ReplyDeleteI cannot understand how doctors can be so wrong. I just met a woman today, in my chemo room, who is now a stage IV breast cancer patient. Her story is equally upsetting to me.
She went to the doctor for years telling her something is wrong, she felt unwell, and there was pain in her spine and ribs. They told her (For years) that it was just muscle damage from an old car accident and to take advil.
Now, years later she finally went for another opinion - guess what she's got breast cancer with mets to her liver, spine, ribs and one more place I don't remember. How truly sad.
She is 42.
Where are you? You are missed! Hope you are well. I also have lobular carcinoma...finished treatment in December '08, now on Femara for 5 years. Wish I KNEW if this was helpful or harmful.
ReplyDeleteDee
Dee - to be completely candid...IT IS GOOD TO BE MISSED ;=]]. Thank you. How are you doing on the Femara? After Femara, then what? What did they stage your ILC?
ReplyDeleteYou’ve been through a tough struggle, TC. Though the findings revealed the cyst was benign, it should have been taken seriously the first time around. A simple lesion on tissue can develop into carcinoma, so a cyst or a kind of tumor should be evaluated more closely for that possibility. Anyway, I hope you’re doing better now.
ReplyDeleteSabrina Craig @ Medical Attorney